School Daze

[I am delighted to introduce a new writer to the blog - Tok's Mum! -Ed]

So, after weeks of preparation, the "big day" finally arrived. Our littlest chap started his first day at school. All the checks had been done:

• His new school had received the all important handover file from Nursery before Christmas, this included his Individual Education Plan, progress to date, an "all about me" summary sheet - everything you could possibly want to know about him.
• We'd been looking at pictures of the new school and using these to ensure he understood he wouldn't be going to nursery anymore.
• We'd been practicing saying "Good Morning Mrs (new teachers name)"
  
• His uniform had been purchased and clearly named.
• Everyone had been speaking positively about his move to "big school".
  

What could possibly go wrong?

Ummm, how about the fact that his new teacher was actually one of two (a job share) and that neither of them had received his file. I kid you not.

Luckily for our little chap, if there is one good thing that has come out of the last few months it's the fact that Mummy has learnt to take NOTHING for granted. A very dear friend advised us to "be a nuisance" as it was one of the only ways to get things done and this has become kind of ingrained in any dealings with the authorities.

His first day consisted of two hours in the afternoon so I "popped" into the office in the morning to ask if I could have a chat with the classroom teacher or the head teacher, just a quick catch up before his first session.... Which is when I found out that his file hadn't been passed over - it was still in the envelope I had hand delivered it in.

You can imagine how mightily unimpressed I was with this news.

When presented challenges you have to face them head on and figure out how best to deal with the situation. So, I took the file up to his new classroom and sat down for half an hour with his (Monday to Wednesday) teacher. In fairness, she asked some good questions and as time was short I encouraged her to read the "all about me" overview as this would be the best tool for her to use in the early days of her time with him.

I asked her to set up a home-school diary, she readily agreed to do this stating that it wouldn't be written in everyday, just if there was an incident to report... I'm happy to say that once I clarified that due to his main issue being one of COMMUNICATION I was looking for them to log things which I could then use as tools to facilitate communication at home and encourage him to recount his day i.e. a book they have read, an activity they did, a song they sang etc.

So, whilst not at all happy with the situation, I was at least confident that our boy would walk into an understanding environment.

As it happens, this wasn't the case, but luckily for them a fabulous little girl from his nursery (who has been somewhat motherly towards him since they first met) also joined and she very firmly took him by the hand and forcefully led him into their first session. I will be forever grateful to her.

My next course of action was thus:

• booked an appointment with the School SENCO
• called the SALT to explain the situation and ask her to be mindful of the fact there are two teachers involved in his case
• called the area special needs teacher requesting she get into the school PDQ
• booked an appointment to see the Thursday-Friday teacher
  

I'm pleased to report that since initially flagging the rather obvious issue that no-one was ready to receive this wonderful - albeit a little ''challenged' - child into the class, the school seem to have raised their game. He and his classmates have had a few short sessions with their first "full" day coming up soon. I have to say he seems to be happy, so far, so good...

But I'll still be keeping my appointments at the school, and will most likely be making a lot more inquiries than I would had this situation not arisen, the school has a duty of care to every child it teaches and I will be giving them a LOT of support and encouragement when it comes to mine.

One of my friends said "He's lucky to have you fighting his corner", I don't look at it as a fight, I think it's more like a journey. He's a tourist and I'm the tour guide responsible for showing him the sights, sounds and customs of this foreign culture he's found himself living in.

--Mum of Tok

Horses for Courses

I think I need to write more frequent, smaller posts. So much of the cool stuff that's happened hasn't got told because I always ending up writing an essay.

Today we took Little M for a horse riding lesson, his first for ages and asked Tokoroth if he wanted to watch his brother on a horse. He was super keen (for someone who rarely expresses a keen interest in anything other than food or going to Grandma's) and we've often been told about the connection that ASD kids make with horses.



From the moment we got there and Little M had saddled up the Tokoroth was squealing "Iwantogoonahorse Iwantogoonahorse Iwantogoonahorse Iwantogoonahorse" on permanent loop. He was so distressed he wasn't actually on a horse I couldn't let him watch his brother. The staff were pretty cool and told us that a few autistic kids ride at the school and that they get them involved with grooming, etc.

While Little M finished up his lesson, Tokoroth and I hung out in the stables meeting the horses and a smile lit up his face. The great big smile we rarely get to see. He loved the horses. Sadly this meant that when we left without him still having been on a horse and this led to a fairly predictable mini-meltdown.

 Technically a success though as the hunch about him bonding with horses paid off. Talking of paid...as thrilled as I am to see that smile I have no idea how we're going to afford lessons for both of them!

(AS)D for Diagnosis!

The CDAC was today - the end of the line or the start of the journey depending on how you perceive it. The CDAC/CDC = Communication Disorder (Assessment) Clinic is the last of a year long series of tests, observations and interviews at home, at the hospital and at his Montessori nursery.

Tokoroth's case was passed up to the consultant paediatrician, after the earlier assessment by Dr N who thought that a more senior colleague should make the final diagnosis (because it was felt that Tokoroth was only-just or not-at-all meeting the criteria for an ASD).

I stopped blogging about all of the stages we have been going through because, as I have explained, I had grown more fearful of the Fragile X diagnosis and just stuck my head in the sand a bit and left it to Tok's mum to coordinate the battery of recent tests and interviews.

The Waiting
This morning though as we sat waiting for the team to call us in I made a list of his current strengths/deficits against the core triad of impairments. Some days he is more autistic than others, something I refer to jokingly as the 'autistic pendulum'. Although he has made a lot of progress with his IEP (Individual Education Plan) crafted by the SALT and local SENCO and implemented by the nursery with support from us I still felt he was ticking a lot of boxes. Enough, in my layperson's opinion, to warrant a diagnosis but with that diagnosis being applied according to the ICD the best I could envisage was PDD-unspecified which isn't quite as encompassing (or useful as it happens) as the (U.S.) DSM-IV-TR equivalent of PDD-Not Otherwise Specified.

Again, it's not the label that's important, it's the help and services a diagnosis unlocks as well as paving the way for a choice between mainstream school or an 'MLD' school (for children with moderate learning disorders).

I listed the characteristics he still exhibited under the social/communication/repetitive behaviour headings and wondered if I'd get a chance to present them to the consultant.

Waiting for the CDC to begin...

The Interview
The morning started with Tokoroth going off with a SALT and his special needs health visitor who, without parents present, ran him through a series of tests (possibly DISCO, I forgot to ask) and the consultant interviewed Tok's Mum and I (possibly the ADI, again I forgot to ask and was also trying not to 'flag' myself).

The interview went well and the consultant pre-empted a lot of of my concerns by evidently drawing the same conclusions from the years reports and assessments. I hardly needed to have worried that she would miss any of this stuff. She made the point about the diagnosis being made according to ICD criteria and again I kept quiet. The interview progressed and I made some gentle points about his imperative/declarative pointing and his echolalia and just like the previous paediatrician she actually welcomed these comments so I just went ahead and talked through my list and unburdened myself about the Fragile X fears. This is where everything started going really well.

The Chat
The consultant said that she felt he warranted an autism diagnosis but still had to go through the processes with her colleagues. She said that she would immediately organise a series of blood tests to rule out Fragile X, any form of thyroid problem as well as a creatine kinase test to rule out any form of muscular dystrophy. The last two tests are simply because he is small for his age but mostly just to give me something else to worry about, I'm sure.

The Waiting Revisited
Eventually we were sent out while the consultant and the rest of the team deliberated, cogitated and digested the morning's sessions. A little over an hour and some anxious coffees later we were called back in.

The Diagnosis
The jury had considered and was about to deliver its verdict. And there it was, written on a piece of paper. Right there, in black and white (and slightly pale yellow due to crappy phone camera).

The Diagnosis

I could hardly believe it. Straight up plain and simple ASD. Just as I called it a year ago before I knew my ASD from my elbow. This piece of paper was in a blue folder which, as Tok's mum put it so perfectly 'unlocks the keys to the city'.

"Wow," I said to the consultant, "he's one A short of an ASDA!" (for the Americans that's the Walmart equivalent of 'four quarters short of a dollar' and I apologise for my awful sense of humour!).

The Help
With immediate effect Tok is under the supervision of the Early Years team who mentor him through pre-school up to age 5. In addition we have regular scheduled speech and language therapy (rather than observation) and access to sign language classes, picture exchange systems and a whole set of interventions I have been coveting for the last year.

Finally, finally, some big, BIG help.

But there was still one more question to be asked: "WHAT'S IN IT FOR ME?!" and as it turns out there are some little extras like a little card that gets you priority access to toilets, let's you jump the queue at theme parks, all the, you know, REALLY useful stuff!

The Parking Permit
Top of that list of 'stuff' for me though is the revelation that we might be entitled to a blue disabled parking permit. I can't tell you how amazing these things are for parking in central London! So for another month I still have the blood tests to worry about, Fragile X could still be the cause of his ASD and a co-morbid condition. Also the bloods could reveal issues relating to his growth and development. But, in the following few weeks while I worry about that, I am under strict instructions to stop hugging him affectionately while referring to him as 'my little blue badge'!

The CDAC! The CDAC! The CDAC is here!

You might be forgiven for thinking there had been a moratorium on this blog and that I hadn't been writing. You'd be right, kinda. I have been starting posts, just never finishing them. We had an almost successful trip to the cinema, yes the CINEMA, where I actually got him inside (with out too much force) and he watched (some of) the film. I wrote a lot about that but just couldn't get to the end.

I wrote a post about the SALT (speech therapist) visits to The Montessori. One about the meeting with the SENCO (special educational needs co-ordinator). I wrote a lot about that but just couldn't get to the end. Same story when the Early Years Action Group got involved and when everything finally came together under MAPS (multi-something something service, I have acronym overload right now and I'm too tired to Google it).

The reason I can't get to the end is because at the end of each post I have to acknowledge something. Something I don't want to acknowledge. I don't think Tokoroth is autistic. The pediatrician didn't think he was autisitic. The whatever-the-hell-the-acronym of the last person to assess him at home last week (I blogged about too, nearly) doesn't think he's autistic. Autistic traits, sure. Buckets of those. But not, they say, we think, Autistic.

You may remember I worried about this before.  I know he doesn't have Aspergers. I know he doesn't have full hell-for-leather 'Classic' autism because you don't have to be particularly well read in the subject to make an informal diagnosis for either of those. I was hoping for whatever the ICD equivalent of PDD-NOS is which, to the layperson, is, simply put, an Autism Spectrum Disorder. I'd live with that. No, actually, I'd cheer for that, because it means it isn't the thing I fear. The thing I worry about.

I've just been hiding my head in the sand, refusing to engage and generally being a bit of a twat if I'm being honest. I went out with him on his own the other weekend and we had an amazing time.


Tokoroth out with me eating falafels and houmous in N16

His, and our, quality of life is high, different and challenging, but high. He's my son and I love him and he is also a great footstool and pillow but, as a parent, knowing what is wrong is a very important part of the psychological jig-saw. If it is *that* I will cope. Just for now I'm hiding from it. But not for much longer.

Did I mention, the CDAC is here? This is THE multi-disciplinary assessment where the SALT, the SENCO, MAPS, and any other TLAs that wish to attend, along with the pediatrician and the consultant pediatrician compare notes and perform (more) comprehensive assessments and the eventual outcome of which is THE LABEL. Technically this is referred to as 'The Diagnosis' but it might just as well be called The Label and it might yet be dependent on further tests to rule in (or out) the worrying thing.

The CDAC is here. Well, it's not far away and I'm exceptionally nervous. Did I ever mention that I was a worrier?

The unfairness of Special

It's not fair! Nothing is fair when you are young. Adults seemingly dictating all the rules, usually while contradicting them with their own behaviour. When a special needs child has siblings there is an extra twist to this.

If Tokoroth's brothers go to the fridge and take out the juice without asking they get told off. If Tokoroth does the same he gets congratulated for making himself a drink.

If Little M asks for something and get's refused and throws a tantrum he gets punished. If Tokoroth gets refused and throws a tantrum he's quite likely to get what he asked for. I'd never give into a tantrum of his brother's but meltdowns from children with specialness are, well, special. They are likely to end with him biting himself or banging his head on the table (and we never have plasters and our kitchen worktops cost a lot of money).

Joking aside, for the sibling of Tokoroth, it's just not fair. What they get told off for, he gets congratulated for, and throwing a tantrum is likely to get them nothing, but him something.

There is however another side to this unfairness. Blame culture. Today I noticed damage, well, ok, very minor damage, to our kitchen cupboards. It was very new and very annoying. We saved for years for those cupboards so I duly lined up the suspects (having eliminated the cat from my enquiries).

Me: Did you do it?
Child 1: Nuh-uh.

Me: Did you do it?

Child 2: Nope.

Me: Did you do it?

Child 3: I want pizza!

(you might be able to guess which one was Tokoroth)

Me: So....WHO did do it?

All eyes turn to the child who can't defend himself. What the siblings have figured out is that Tokoroth can't answer the charge put to him, he can't even look shifty and awkward, he simply doesn't understand the question. Instant get out clause. Tokoroth did it. Every time. And I still don't know who damaged the kitchen cabinet.

It's just not fair!

Interesting comment

Interesting comment on the Fragile X post.

"An interesting observation that comes of comparing notes with other parents is that most professionals have preferred opinions that they tend to apply to most of the kids that they see. One person gives out PDD-NOS diagnoses, another gives out Asperger's. One person sees anger issues, another sees ADHD. In some ways, the professionals are easier to classify than the kids."

I completely get where this is coming from and I'm curious to se if other people have had this experience too.

Pizza!

He'll talk if there's food involved!

"Daddy read it..."

It's hard at the moment to have any clear idea of what I am doing because my head is so firmly buried in the sand. I'm so fixated on the new possibility of Fragile X that I have lost sight of the bigger picture, not appreciated or blogged the incredible work the Montessori has done with his IEP (individual education plan) and just generally ignored or at least not acknowledged how the NHS and LEA plans are finally coming together with a wealth of support and options for him.

I haven't been ignoring Tokoroth though, I've just been ignoring the problem.

Normally I make allowances for the specialness and read one book to him and a different book to Little M. Tokoroth loves his books. This is his favourite:

But I'm always impatient to read the Beast Quest stories to Little M. We are up to book eleven now:

I have, in the last few weeks, plonked them in their bed and just read Beast Quest. As you might expect Tokoroth took very little notice, played distractedly or flicked through his own books. To engage him, well, to keep him quiet so Little M and I could read in peace, I used to show him the pictures and look at him as I read the story and, at times, he almost seemed interested. He was quieter at least. Without speech I have no idea of what he was really thinking.

A week ago a funny thing happened. Tokoroth's mum is a bit more patient than me and had been reading his books to him before I went in with Beast Quest. I heard her ask him what book he wanted and almost fell over when I heard him squeak "Beeast Queest" shortly followed by "Daddy reeead it".

Bloody Hell. And now it's every night. He curls up with his brother, squeaks his request for Beast Quest and lays quietly, attentively and extremely contentedly usually falling asleep after a chapter or so.

I have no idea if he can follow the story or whether he has simply adopted this as a routine but I am loving this new development and dare to dream that he understands the story and is just as hooked as his brother and I.

The power of books and the wonder of reading are a true gift.

Knowing Me, Knowing You.

It might be a parent thing. It might be a 'me' thing. It was the same with his little brother. When he was a baby I used to worry that something would happen to me and Little M wouldn't 'know' me, that I'd just be a name, a photograph but not a memory.

As he grew he into a lovely, lively, little boy we talked, we played, we got to know one another and we continue to shape each other every day.

I no longer have The Fear with him.

I have it with Tokoroth though. I worry that he will never know me, that we'll never build that relationship, that if something happens to me we will never really have spoken, never really have learned of each other or not in a way that would stem this fear.

Before Little M could speak I kept a diary of my early days with him, documented our moonlight strolls when I took him out in his pram, I added photographs of us, when he was a tiny baby, watching the sun rise over Spitalfield's market on a Sunday morning, so that if anything happened he'd know that we did stuff, he'd know that we'd spent that time together and that could help seed some memories.

Different but Amazing.

As I struggle to apply the same process to Tokoroth I am reminded that when you are a parent or carer for a child with special needs you have to accept that the rules are different and so it's time to quite pandering to The Fear and just enjoy the amazing but different times that we have.

The memories will surely follow.

Little M. Fragile X.

Did I ever mention that I was a worrier? My natural disposition is to worry. If there was nothing to worry about, I'd worry.

I have been worrying out loud on this blog for a while. One persistent theme is the 'is he or isn't he?' question in relation to a diagnosis of an autism spectrum disorder for Tokoroth. My worry has always been 'what if he's not?' and that's not because I want him to be autistic but because if his symptoms are not related to ASD then what can I attribute his developmental delay to?

Rewind.

Today was not D for Diagnosis Day. I had to actually get to the Child Development Clinic appointment to find out what we were there for (despite asking several times).

Today was an assessment by a pediatrician who, with the help of an assistant and observed by a student, led Tokoroth through a multitude of tasks to test his abilities against standard measures for motor development, speech, social interaction and general developmental milestones.

Tokoroth was very quiet, very cooperative and very engaged. He smiled, listened, and, mostly, did what he was asked. Mostly!

I couldn't say for sure but I suspect this may have been the Autism Diagnostic Observation Schedule (ADOS). I didn't ask because I was determined to bite my tongue and act like I knew nothing (see previous post) so as not to annoy the clever, real doctor person.

As it happened I shouldn't have worried. The pediatrician was straight out of the school of Simon Baron-Cohen and when my knowledge leaked out (curse you, loose tongue) she was really interested to know what I knew and how I knew it. We chatted about ICD v DSM and I explained he wasn't normally mute and displayed delayed echolalia and she was entirely comfortable with me doing this. She was particularly interested in my self-observation of Broader Autism Phenotype. In fact it seemed helpful. It also meant I could ask the questions that have been burning away inside me that no one else could answer.

Result.

The pediatrician ticked some boxes, wrote some notes and did some adding up. Then she scratched her head. She explained that the next step was what I refer to as D-Day. This would be the full multi-disciplinary assessment with the SALT, pediatrician (possibly the same one) and other specialists. She asked me what I thought would be the outcome. I said I thought PDD-NOS or whatever the ICD equivalent was but that I wasn't sure because sometimes he just didn't seem to fit in that box either.

Hmmmm.

She scratched her head a bit more. She told me that she wasn't sure he'd warrant a diagnosis of a spectrum disorder. Wasn't sure. Maybe. Maybe not. Maybe. Maybe not. She was doing the same Homer Simpson dance I was doing a few posts back. She said that because it was such a fine call that she would suggest that the assessment was carried out, not by her, but by one of the consultant pediatricians with more experience with which to make a call.

Bombshell.

Then she asked the question, that one I was asking at the beginning of this post. What if he's not autistic? What is the cause of his autism-like symptoms? She looked at me and mentioned that it might be an idea to get some blood tests taken and test for chromosome abnormality. She asked me if I knew why she was suggesting that.

Fragile X.

I had discounted this (based on physical observation alone) but still feared it. I fear it maybe because I don't know it (compared to what I know about ASDs) but also because it means that maybe I was not passing on autism genes but that his mum was passing on the Fragile X gene.

The reason that Fragile X being the cause and the impairment being a product of that worries me is because it has wider implications. Little M, bother of Tokoroth, is a little genius. I had figured that he was lucky to escape my pesky genes and would be free of the challenge of living with autistic traits. If Tokoroth has the Fragile X gene and that is the cause of his intellectual disability then it likely that Little M could be a carrier even if he is not symptomatic. Or not symptomatic yet.

Either way we could be faced with having to explain to both of them that they have, might have in the future, or that their children might inherit, a chromosone abnormality that can result in a spectrum of characteristic physical, intellectual, emotional and behavioral deficits.

Maybe.

Of course Tokoroth might just be autistic. Or just lazy. Or something. Did I ever mention that I was a worrier?